British Medical Association

In a former life I used to be a midwife working in an extremely busy labour ward (I’m third from the right in this photograph). In spite of the fast turn-over, we spent long hours with the couples in our care, and often developed warm relationships. We were, after all, sharing one of the most special, intimate and precious experiences in their lives. And for me certainly, it was always a privilege and a thrill as well as a relief to see the infants safely in their mothers’ arms. Indeed, I always said that, if it ever ceased to be a miracle, I would quit the job. It never did; I left for other reasons – good ones.

However, it wasn’t all a bed of roses. One day a mother registered a complaint against me with my boss. Why? Because apparently, I had exhorted her to ‘push into your tail end.’ It demeaned her apparently, reducing her to the status of an animal! Now this was fifty years ago, at a time when we’d never even heard the term ‘political correctness’, never mind become obsessed with the notion, but even so, I confess I felt mildly irritated. When you’re spending a good chunk of a day/night with a woman, encouraging, supporting, reassuring; working through official breaks and long past your shift-hours to deliver continuity of care, you don’t tend to doctor every word that comes out of your mouth. You’ve got more important priorities, I’d suggest. Especially if the woman hasn’t a clue what she’s supposed to be doing and has no knowledge whatsoever of the anatomical names for the parts of the body she’s employing for the mysterious but monumental effort of giving birth. But hey ho! I could only apologise and try to learn from the experience. Fortunately the Superintendent of the Labour ward was a no-nonsense, straight-speaking, hugely experienced woman who fully shared my values, and she generously let me know (without words) that I had her sympathy and confidence.

When I watch Call the Midwife on BBC1, I’m often reminded of those days, since the programme’s set shortly before the time I’m talking about. The Nonnatus midwives even use terms of endearment when encouraging the mothers in their care – ‘sweetie’, ‘love’, ‘pet’, ‘darlin’!! Ppphhhwww!!! It’s some years now since real-life carers were told to eschew such expressions, lest patients/residents/clients, felt patronised, although I’m quite sure they were used in all innocence as terms of affection and engagement, not slights.

Nevertheless, all these decades later, I’m feeling a sense of disbelief. The Royal College of Nursing has just issued a document for its practitioners in which it advises against addressing women as ‘ladies’ to avoid causing unwitting offence … hello?! Other terms now off-limits include ‘pensioners’, ‘alcoholic’, ‘mankind’, ‘manning a ward’, ‘gays’ … Oh, and don’t forget to be scrupulous about selecting the preferred pronouns for people who don’t subscribe to the usual binary classifications, and … You get the idea. Nor is the RCN alone in this; it’s about three years now since the British Medical Association deemed the term ‘expectant mother’ to be taboo, lest it offend transgender people …!!!

Really? Seriously? Has the world gone completely mad?

In the security of my own blog, I think I might be allowed to voice a personal opinion and declare that I honestly think the powers that dictate these things would be well advised to concentrate on gaining more time for clinicians to do their jobs, without the colossal pressures currently hedging them about with stress and restrictions. Time for them to save lives, to ensure safety and the best care, in the first instance. Giving them breathing space – time to attend to those niceties and refinements without burning out themselves. Easing the chronic under-staffing and over-working they labour under, instead of putting even more pressure on them to examine every word before uttering it. Pphshaw!

I’ve personally had a more-than-usually stressful year this year but it’s nothing compared with the one the family and staff involved with little Charlie Gard have had.

Charlie Gard
I guess you’ve all heard about him, the little lad born last August with a rare genetic disorder which causes progressive muscle weakness and brain damage. Blind, deaf, kept alive on a machine, unable to swallow food, with little or no awareness of the world around him. And totally unable to speak for himself. Yes?

This baby has become an unlikely celebrity, not just here in the UK but around the world. Even the Pope and President Trump know about Charlie and have attempted to intervene (hmmmmm …). Why? Because his parents, Connie Yates and Chris Gard, have been unable to accept the medical advice of doctors at Great Ormond Street Hospital in London that their son is so irreversibly damaged that he should be allowed to die with dignity. Instead they want to take him to the USA for experimental treatment, and the public have been so touched by their tragedy that they’ve stumped up £1.3 million to fund this long shot. But to date Connie and Chris have been denied that opportunity … and then they were given more time to build their case … and then this week the neurosurgeon recommending this treatment was flown over from the States to assess Charlie … and now the case is going back to the courts tomorrow. And all this time, staff are caring for him, keeping him alive, against their better judgement.

Now that’s what I call real stress. All round. OK, I know there’s been huge coverage of this story but forgive me if I add my mite. And if I take a while to say it carefully. (I’ll compensate with a short post next week. Promise!)

My viewpoint
I should probably explain, that in a former life I was a university researcher, and this whole business of withholding or withdrawing treatment from very ill babies was exactly what I studied in great depth over many years. As part of my investigations I interviewed 176 medical/nursing staff and 109 parents involved in these kinds of cases. Harrowing stuff. And so powerful was the voice of the parents that the book reporting this study (Crucial Decisions at the Beginning of Life) was voted Medical Book of the Year in 2002 by the British Medical Association. At the award ceremony it was said that listening to the voice of these parents would be salutary for all medical personnel in their dealings with families across all disciplines.

So what did these mothers and fathers tell us? That they wanted to be closely involved in the decision making process. It was part of being a parent. Not all wished to have the final say but they all wanted to be part of the team responsible for the decision. It stands to reason it cannot be only down the parent; they don’t have the knowledge or skill or medical expertise required. It’s a team effort, doctors, nurses, parents, working closely together, all putting the baby’s interests at the centre of their deliberations, drawing on other experts and supporters where necessary. Mutual trust, respect and collaboration. That’s the ideal.

In Charlie’s case something has gone catastrophically wrong – for reasons no one outside that tight knit group around Charlie’s hospital bed can really know. The parents have told their side of the story to the media, we’ve heard what they think. But the doctors are bound by professional ethics to respect the confidentiality of their patients and families; their arguments will never be articulated in public. And one side of such a complex case is never enough.

So I want to make a couple of points which I think are being overlooked in at least some of the reporting.

The staff
This famous London hospital has had Charlie in its care for months and months. Those intimately involved in his day-to-day management will have formed real affectionate ties with him. They want only what’s best for him. And as they’ve watched him deteriorate, with each grim test result, all unseen and unsung, the team will have agonised over the options, done all in their power to explain to the family the bleak prospects and consequences of prolonging the dying process. They’ll have understood the catastrophic implications for the family, given them time to accept the facts and the prognosis. Trust me, they didn’t want to go to court. It’s very much a last resort when all efforts to communicate effectively have failed but the child is clearly at risk of harm.

Which only goes to show how convinced they are that it is not in Charlie’s best interests to spin the dying process out. They are quite sure that any further treatment would be futile. They are quite sure that keeping him alive isn’t a kindness, may indeed be a harm. And the courts – from the High Court through to the European Court of Human Rights, have all upheld their expert medical view. Which brings me to one of the points I want to make which I haven’t seen included in media reports. Decisions about medical futility rest solely with the doctors. They know; parents don’t. Furthermore in law they are not obliged to treat a patient when they know it to be useless. Nevertheless, Charlie’s doctors have been prepared to keep treating him – expensively, around the clock – to give the parents more time; time to come to terms with this tragedy; time to say goodbye. And in practical terms, this translates as, each day doing things with and for him that go against their own better judgement. How harrowing must that be?

The parentsOf course the parents are ‘utterly heartbroken‘. They’ve discovered that they both carry a faulty gene and that’s why Charlie has this terrible illness. One after another their hopes and dreams have been cruelly dashed. Dreams of a perfect baby. Hope that the damaged baby will survive. Hope that the brain damage might be reversible. Hope that a completely unproven (not even tested on mice!) experimental treatment might just save him. Hope that they will fulfill their daily promise to him that they will bring him home – to the room, the cot, the toys, that they have lovingly prepared for him. Hope that if he has to die, he will slip away in that private gentle environment.

And yet, it seems, even in the face of all the evidence, the parents are struggling to accept the enormity of Charlie’s medical situation. His mother is so deep in denial that she even thinks her little boy could grow up to be perfectly normal. If only! They believe strongly that parents know best. They perceive the experts who say otherwise are somehow denying their prior parental rights, and Charlie a right to life. And with such a major breakdown in communication, trust has been lost. Cut adrift from their anchors they are ready to clutch at any straw, exhaust every remote possibility.

From a purely human standpoint, their cry is perfectly understandable: ‘We are utterly heartbroken, spending our last precious hours with our baby boy. We’re not allowed to choose if our son lives and we’re not allowed to choose when or where Charlie dies‘. Upsetting, bewildering, devastating. Totally. We can sympathise with that. But – and it’s a big but – there comes a point at which letting go is a greater good than saving biological life. The medical team know this. They know it is not good for Charlie to be subjected to all that is keeping him alive, or to further futile treatment. And they have sworn to ‘do no harm’. But the parents are desperately trying to save him.

I can only hope that when the decision is made that Charlie should be allowed to die with dignity the parents will be allowed to set things up for those last precious days, hours, minutes, in such a way that they will feel like a real family saying a gentle farewell, free from the bitterness and resentment that has characterised this painfully extended battle.

Well-meaning public and outsidersThe nations’ hearts bleed for these parents. Of course they do. Hundreds of thousands of Joe Bloggs have rushed to sign a petition supporting them. The Pope has reached out to them: the Vatican hospital is at the family’s disposal and will gladly look after Charlie. The President of the USA has assured them of support from across the Atlantic; Charlie has now been granted permanent residence status in the US to allow him to be transferred and treated there. On the face of it, all very compassionate and caring. But hey, let’s not forget the realities here.

None of these people has any idea what this disease means; most have never even heard of the condition (mitochondrial DNA depletion syndrome) or the supposed possible treatment (with nucleosides), never mind knowing the exact circumstances in this particular case. Not even the medical expert from the States who was flown in to consult with the GOS team this week knew the full picture until he’d done tests and held long meetings with Charlie’s doctors. So, laudable though it is to care, this kind of blind support can in fact be counter-productive. Only those people intimately involved are qualified to say what is the right thing to do. And as for those misguided people who’ve attempted to intimidate the medical personnel responsible for Charlie, even to the point of issuing death threats – words fail me. But the extremity they represent should be a cautionary tale to the rest of us: the public are not experts. Crowd hysteria, vitriolic rhetoric, are no substitute for calm, measured, informed debate.

There’s going to be no happy outcome here, it’s a desperately sad and difficult case, but let’s not join in the demonising of the experts – medical or legal – who are only doing the horrendously difficult job that their years of training and experience equip them for, and doing it with the utmost discretion and integrity.

To begin with, another state in the USA, California, has made assisted suicide legal as from 1 January next year. They are the fifth state to do so. The law, based on a similar measure in Oregon, allows doctors to prescribe drugs to end a patient’s life if two medical practitioners agree the person has only six months to live and is mentally competent. Interestingly, in this case, the law as it’s presently written, will expire after ten years unless extended. Apparently this was a compromise made for those lawmakers who fear unintended consequences such as targeting of the poor, disabled or elderly. Sounds like a sensible caution to me.

This week too, we’ve heard of a report by the Economist Intelligence Unit, which finds the UK ‘the best place in the world to die’ as the newspapers put it; top of 80 countries involved in their survey when it comes to end-of-life care. Key factors are identified as a strong hospice movement, palliative care integrated into the NHS, specialised staff, and hospital/community integration … hmm … more of this anon.

Then, building on this, Baroness Ilora Finlay, a major spokesperson on the topic, and herself a former medical consultant in palliative care, came on TV this week to talk about her draft Palliative Care Bill which tries to address the disconnect between medical and social services in care of the dying; to provide equitable and efficient care for all. Being top in the survey is encouraging, she says, but there’s still plenty of work to be done to ensure excellence across the board. Indeedy!

The emphasis is on really listening to what the families need at a time when they are caring for a loved one, and providing a central hub for familes to liaise with, in order to avoid the frustration of time and effort wasted searching for the right people to help.

This all resonates for me at the moment. Someone I care about was recently admitted into the acute NHS system, into a vast, bright new shiny hospital, for management of her broken hip. Sybil (not her real name) is in her nineties, she has dementia, she is bewildered and confused by the alien environment, as well as immobilised by a fracture and on medication for pain relief. I’m quite sure her actual medical treatment was expert: the hip was fixed rapidly. But – a big BUT – the staff in the two wards Sybil was placed in were openly hierarchical, those with power seemed to have no time to listen, no willingness to know what would help to keep this lost wee soul calm and secure. It was down to us who know and love her to try to fill these gaps as best we could in the times we were able/permitted to be with her. And it was obvious that Sybil was not happy; she caused mayhem on more than one occasion!

This week she’s been transferred to a low-tech community facility; older, more run down, higgeldly-piggedly. But the difference inside the ward housing her is palpable too. Everywhere you go staff are friendly and helpful, anxious to accommodate the needs of the patients in their orbit; anything that will help Sybil settle and smile is welcomed. We can walk away knowing she’s in good hands. She’s already visibly more relaxed.

Good care is so much more than up-to-the-minute medicine. And when it comes to elderly people with dementia, it’s often the little things that make the difference between wanting to go on and preferring to die; little things that tell them they are valued and cherished and understood.

Fifty years ago I wrote an essay – using this very Parker pen – about the care of patients being so much more than delivering technical procedures efficiently. It won a prize from the British Medical Association no less! Back then the medical technology and capability we take for granted in the twenty-first century was undreamed of, but basic human needs remain much the same. That message is needed every bit as much. Let’s not lose sight of this in all our cleverness.

The super-observant among you will have noted that my blog comes a few days late this week. There’s a very good reason for that. Simple really: I wasn’t here to send it.

I’ve known for several weeks that my 2008 novel, Right to Die, had been shortlisted for a prize in the Popular Medicine category of the British Medical Association’s Book competition, but we’re asked to keep it confidential. Wahey! What a surprise.

As some of you know, I had a similar experience back in 2003 when my academic book, Crucial Decisions at the Beginning of Life, won first prize in the Basis of Medicine category, and then went on to win the overall prize, Medical Book of the Year. I confess I still find that hard to believe, but when confidence starts to plummet I sneak a wee look at the trophy and tell myself I must be able to write really.

Anyway, it’s no longer confidential information because on Tuesday of this week the award ceremony took place in London. I duly invested capital in travel and accommodation, (regular employees please note: no expenses accounts for lesser speckled authors), dug out something decent to wear, and off I went … braced against the cold wind and rain of a typical Scottish September morning … only to be hit by a steamy heat-wave at Kings Cross!

BMA House is a palatial venue, but well used to muggy days, and to my relief the initial drinks reception spilled out into the courtyard. Aside from the temperature problem, it’s daunting knowing only four people in a crowd of about three hundred – two of whom I didn’t get close enough even to wave to. Bit like standing on a crowded London tube station trying to find your granny.

A record 684 books were entered into the competition by publishers this year, in nine categories. Shortlisted authors are invited but none of them know who’s won, adding an element of excitement and tension. But it has a downside: lots of winning authors were absent, including the duo who won the big overall prize. Somehow one can’t applaud quite so energetically when the certificate is collected by the publisher alone.

Right to Die didn’t win but it was the only work of fiction shortlisted and it got a good press. It feels like a real coup to have the endorsement of medicine’s most august body for my efforts to make ethics accessible and enjoyable.

Advance warning: no blog next week because I’m abroad – recovering from the excitement!